My Latest Supplement Experiment: Astaxanthin and MSM Eye Drops

Written By: ingridricks - May• 30•14

pillsFor the past month and a half, I’ve added a daily dose of  Astaxanthin to my supplement mix on the advice of Dr. Andy Rosenfarb. I’ve also been dousing my eyes twice a day with the MSM eye drops he supplied me with the hopes that between the two, they will help my central core vision. Dr. Rosenfarb’s theory is that the combination of the two may help to clear out the scar tissue/pigment.

I hadn’t given it much thought until a couple of days ago, when I pulled out a paperback book and noticed that as long as I had good light, I could read it with NO reading glasses.  This is amazing for me considering that when I first went to see Dr. Rosenfarb last Deceember, my near-sided vision was 20/125 in my right eye, 20/80 in my left eye.

I’d been curious about Astaxanthin even before Dr. Rosenfarb recommended it because I’ve read that it’s the strongest antioxidant around for the eyes.

Here are links to a couple of in-depth articles on its benefits. I’m particularly interested because I know from my last appointment with a retinal specialist  (a year and a half ago) that I had cataracts forming — and this seems to do battle with them.

 

Here are some benefit highlights:

  • Astaxanthin is by far the most powerful carotenoid antioxidant when it comes to free radical scavenging: it is 65 times more powerful than vitamin C, 54 times more powerful than beta-carotene, and 14 times more powerful than vitamin E.
  • Astaxanthin is far more effective than other carotenoids at “singlet oxygen quenching,” which is a particular type of oxidation. The damaging effects of sunlight and various organic materials are caused by this less-stable form of oxygen. Astaxanthin is 550 times more powerful than vitamin E and 11 times more powerful than beta-carotene at neutralizing this singlet oxygen.
  • Astaxanthin crosses the blood-brain barrier AND the blood-retinal barrier (beta-carotene and lycopene do not), which has huge implications for the health of your eyes.
  • It is soluble in lipids, so it incorporates into cell membranes.
  • It is a potent UVB absorber.
  • It reduces DNA damage.
  • It is a very powerful natural anti-inflammatory.
  • No adverse reactions have been found for people taking astaxanthin.
  • It is virtually impossible to obtain the recommended daily amount of astaxanthin from diet alone because there are only two prime sources: microalgae and sea creatures that consume the algae (such as salmon, shellfish, and krill).

For those of you who are interested, here’s a list of other supplements that I’m religious about taking:

  • Zeaxanthin
  • DHA
  • Vitamin D
  • TUDCA (been out of this for a few weeks..but reordering it)

And here’s a link to the Astaxanthin I’ve been purchasing. It’s the highest dose I could find.

Happy Weekend!

 

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RP-Free Moments from All of You

Written By: ingridricks - May• 23•14

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I’ve loved reading these ENJOYING LIFE posts from all of you. It’s inspiring and such a reminder to embrace the moment and Live Life.  If any of you are looking for some great ideas for bringing joy to your weekend, read the lists and posts below.

Erin from Texas:

  • Playing outside in the water with my 2 year old son
  • Watching the sunset
  • Morning walks
  • Reading my book with a cup of coffee

Cindy from Ohio

I don’t have RP but macular degeneration, but here’s my list:

  • Tea and good conversation with my sister
  • Planting flowers in my garden
  • Napping with my cats
  • Writing a blog post for my city’s website
  • Watching fav TV show (Dancing with the Stars)
  • A nature walk at local preserve

Marie-Josée
 from Montréal, Canada

  • Going to work everyday as a nurse
  • Taking public transportation
  • Drinking my morning coffee with Marilyne, the best collègue in the world
  • 
Walking and going to the gym
  • Shopping with my husband and talking to him
  • Seeing my kids

Rubén from Chile 

  • I like to walk with my wife and take her hand
  • Go to the beach with my wife and my little dog and look at the sea
  • After work, I like to have tea with my wife in my bed
  • I like watching movies, especially my fauvorites. For example “Braveheart, Gladiator, etc” and old series as Lost, Dr. House
  • I like cooking, any things, fish, meat, pasta mmmmm I´m hungry

Doing this list, I can see there are many things I do every day and I enjoy that

Marlene Buettner

I, too, can enjoy so much. It’s been a long process grieving over all that I “can’t do”, but there is still so much that I can do!!

I am gratefull for every bit of vision that I have. I figure for the useable vision I have that I function pretty damn good.

My biggest joy this past year has been taking a yoga class. So good for physical and has helped me deal so much better with the “mental”.

I am ready to move on and enjoy my life more. As a matter of fact I am taking a spur of the moment trip to Italy. One of my good friends has moved there for 8 months and another good friend and I are going to visit her. I plan on seeing while I still have enough vision left to see. I am confident that I will manage fine with my two good friends and jokingly tell them that I am going to teach them to be good guide dogs. It feels so good to have something to look forward to and feel like I am living again!!!!!

 

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My RP-Free Week & Aha Moments

Written By: ingridricks - May• 19•14

Enjoying_Life_by_BenHeine

I spent last week focusing on my daily life and all the things I can do and enjoy. And it turns out that it’s almost everything I could do when I had “normal eyesight.”  It made me realize something powerful: that despite my low vision and the occasional challenges it poses, it doesn’t keep me from enjoying life. It also drove home something else for me: that I depend a great deal on my eyesight and that it’s worth continuing to do everything in my power to save what I have.

 A Few Highlights from My Week:

  • Daily morning walk and hemp mocha with John
  • Shopping with my daughters
  • Enjoying a glass of wine with neighbors
  • Sitting on our deck soaking up the sunshine
  • Tea and conversation with a good friend
  • Working out at gym
  • Delivering a keynote address to students at a Youth Challenge Awards ceremony
  • Jury Duty (okay – not my favorite thing to do…but I’ve been doing it)
  • Irish nachos, IPA and movie night with John
  • Cheering on a friend as she marched in Norwegian Independence Day Parade
  • Hanging out at the Sunday Market with my family – listening to street musicians, sharing a bratwurst with my daughter and picking out our weekly $5 bouquet of fresh flowers

Okay – now it’s your turn to share your RP-free week and aha moments.  Post them in comments with your name and where you live and I’ll do a compilation blog post on Friday. Wishing all of you an amazing week.

 

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Taking a Break from RP

Written By: ingridricks - May• 12•14

Relax-a01-v3-9q-make-relaxation-habit-800x800

I love hiking and nature. So for Mother’s Day, I told my husband and two daughters that I wanted to head to Discovery Park—a huge wildlife park in Seattle that features a variety of hiking trails, including one that takes hikers down to the beach and to a very cool, old lighthouse.

My daughters ran ahead and took a shortcut down the bluff while John and I picked our way down a narrow trail packed with at least a couple hundred scattered wooden steps (with very spotty railing) that eventually led to the beach.

On top of the uneven wooden stairs that seemed to spring out of the dirt trail without warning, the trail was surrounded by trees that shaded the area and made the light dim.  I managed it—but only because John was at my side, holding my hand and calling out to me whenever we neared a step.

It made me realize how much energy I devote every day to this disease, and how much I just want to not think about it. So here’s my goal for the next week and my challenge for all of you: Let’s forget that we have RP for an entire week. Let’s pretend to be normal-sighted people and focus on all of the things that we can do rather than what we can’t, or what we struggle with. And then let’s all share our experiences here on this blog a week from now.

Along those lines, I just want to say thank you to all of you for the positive energy you are always sending my way. On the days I get a little discouraged by this lifelong eyesight-saving quest and the enormity of it all, it’s the words I receive from some of you that help me to keep plowing forward. It’s hard to battle this disease alone. But together, there’s No Stopping Us.

 

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Pulling Together to Beat Retinitis Pigmentosa

Written By: ingridricks - Apr• 28•14

 

768px-Working_Together_Teamwork_Puzzle_Concept

For the first six years after my diagnosis, I hid my disease. I didn’t want anyone to pity me or think less of me, and I didn’t want Retinitis Pigmentosa to define who I was.

Even after I started writing about my experiences with the disease in essays and a memoir, I steered clear of Facebook groups or other online communities that would connect me with fellow RP sufferers because I didn’t want the constant reminder that I was losing my eyesight.

The irony in all of this is that when I finally decided to DO EVERYTHING in my power to save my eyesight and began doing more avid research into treatment options, I discovered that there are plenty of people out there who are searching for solutions, and they are sharing their findings in online groups.

If you’re not already a member, I highly recommend that you join the RP Research and Treatment Group on Facebook. It’s filled with discussions and posts on everything from alternative therapies to the latest progress in gene therapy and retinal implants.

Along with staying on top of different treatments and supplements available, my decision to finally connect with other RPers has put me in contact with people who are devout RP treatment explorers and are doing their own pilot studies and personal experiments to try to halt the progression of RP and eventually reverse this disease.

While advancements are continuing to be made in the medical community, the hard truth is that RP is a backburner disease when it comes to funding and research because of its relative rarity compared to diseases like age-related macular degeneration. But that doesn’t mean we’re doomed. The key is to pull together, keep trying new things, and keep sharing experiences and resources. Because RP is an umbrella term for a group of disorders, there isn’t a one size-fits-all-solution for this. But by sharing information and personal experiences, we can help each other find viable treatment options to halt or at least slow the progression of this disease until a cure is available.And who knows, maybe one of us will be the one to discover the cure.

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Saying NO to Cyber Bullies and Attacks

Written By: ingridricks - Apr• 21•14

Print

I hate conflict—and hate putting any negative energy into the Universe. So I usually just ignore it when people send ugly emails or comments. But recently I’ve had two people—one an acupuncturist, the other hiding behind a gmail address—leave attacking notes re: Dr. Andy Rosenfarb.

Here’s what I want to say LOUD and CLEAR: This blog is about my personal journey with my eyesight—and all the steps I’ve taken to save it after being told repeatedly by retinal specialists that there is no hope for me. That I should just accept that very soon I won’t have eyesight, won’t be able to see my daughters grow up, won’t be able to see my husband or my own reflection in the mirror.

Now, more than a year after I started this quest, my eyesight (while still a long way from great) has improved significantly—something I’ve been told is impossible.  And I chalk this up to two things: a drastic change to my diet and the acupuncture/light therapy treatment provided by Dr. Rosenfarb.

While there is a lot of research and work to be done, I applaud everything Dr. Rosenfarb is doing to get his RP treatment protocol measured by Western medical standards—first through a small pilot study done in conjunction with Johns Hopkins University, now a larger study being funded by the NIH.

I’m not writing this blog as a journalist. I’m writing it as a patient on my own eyesight-healing quest. I know there are other acupuncturists who are working to treat eye diseases. I think that’s wonderful because, done right, I believe this is a valuable treatment option for many people struggling with RP. Rather than trying to tear down people like Dr. Rosenfarb who are doing everything in their power to share information and develop standard treatment protocols, I challenge everyone to join Dr. Rosenfarb in his efforts to get this treatment measured by Western medical standards so that insurance will begin covering this treatment for those of us who want to access it and are struggling to do so financially. I challenge everyone to work together to provide a broad network of acupuncturists committed to providing a standardized, measurable, affordable treatment that can be accessed by RP patents around the globe.

Please let’s all work together to share information and help the hundreds of thousands of people around the globe (me included) who are struggling with this devastating disease to save our eyesight.

 

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The Battle Against Inflammation

Written By: ingridricks - Apr• 08•14

Fuselage_fire_2_307My new friend, Joseph, turned me on to this website. It’s called Deflame, and it’s packed with great information about the dangers of inflammation and ways to reduce inflammation in your body.

I know it’s hard to break eating habits and revamp diets. Believe me, I know. But there is so much research now about the correlation between the foods we eat and the inflammation in our bodies that we’re sticking our heads in the sand if we don’t pay attention. Because the other thing I’ve discovered is that inflammation feeds degenerative diseases—including Retinitis Pigmentosa.

I like (love) bread as much as the next person. But the fact is that flour, even if it’s whole grain and organic, it’s a serious pro-inflammatory. Sugar is too – it’s a toxin and wreaks havoc on our health. Then there’s processed foods and sodas, which are a bit like chugging down Clorox.

I’m putting this is writing to remind myself that I’ve got to stick with it. On days like today, I understand a little of what it must be like to be an alcoholic fighting the urge to drink. Just got to take it one day at a time.

 

 

 

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Acupuncture RP Treatment Round 2 – TEST RESULTS

Written By: ingridricks - Mar• 21•14

happiness-within

I just wrapped up my weeklong treatment with Dr. Rosenfarb and have experienced more improvements, particularly in my mid-to-far horizontal and bottom periphery (I still have very little top peripheral vision).

I still have a donut of complete blindness around my central core– but it’s shrinking from the outside in. The goal that Dr. Rosenfarb and I have now set  is to concentrate on strengthening my central vision).  My visual acuity is now fantastic and I have expanded my core central visual field a little. But it still needs work.  I’m thrilled maintaining what I have. But if I can expand that some, even better.

Here are my test results to date — with today’s results included.  Happy Friday everyone. I’m heading off to catch my plane.

VISUAL ACUITY

Near Right Vision:

  • Before Treatment: 20/125
  • After Treatment: 20/50

March 2014 Testing 3 Months Later:

  • Before Treatment: 20/63
  • After Treatment: 20/50

Near left Vision

  • Before Treatment: 20/80
  • After Treatment: 20/50

March 2014 Testing 3 Months Later

  • Before Treatment: 20/63
  • After Treatment: 20/50

 Far-Sighted Vision:

  • Before Treatment: 20/40
  • After Treatment: 20/25

March 2014 Testing Three Months Later

  • Before Treatment: 20/30
  • After Treatment: 20/20

 

MANUAL VISUAL FIELD TESTS: RIGHT EYE

Right Eye Horizontal (central core)

  • Before Treatment: 0-2 degrees
  • After Treatment 0-6 degrees

March 2014Testing 3 Months later

  • Before Treatment: 0-2 degrees
  • After treatmentL 0-9 degrees (with another opening between 12-27 degrees)

Right Eye Horizontal (far periphery)

  • Before Treatment: 50-80 degrees
  • After Treatment: 40 – 93 degrees

 March 2014 Testing 3 Months later

  • Before Treatment: 40 – 80 degrees
  • After Treatment: 40 – 95 degrees

Top Right Eye (Vertical)

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-9 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-8 degrees

Bottom Right Eye (Vertical)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-6 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-5 degrees

Bottom Right Eye Vertical (far periphery)

  • Before Treatment:  80 – 90 degrees
  • After Treatment 65 – 90 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 60- 100 degrees
  • After Treatment: 55 – 105 degrees

MANUAL VISUAL FIELD TESTS: LEFT EYE

Left Side Horizontal (central core)

  • Before Treatment: 0- 6 degrees
  • After Treatment: 0-6 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-5 degrees (with another opening between 10 -20 degrees)

Left Side Horizontal (far periphery)  

  • Before Treatment 80-90 degrees
  • After Treatment: 70-95 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 65- 95 degrees
  • After Treatment: 40-95 degrees

Top Left Eye Vertical (central core)

  • Before Treatment: 0-6 degrees
  • After Treatment: 0-6 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-6 degrees

Bottom Left Eye Vertical  (central core)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-7 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-8 degrees

Bottom Left Eye Vertical (far periphery)

  • Before Treatment: 70-90 degrees
  • After Treatment: 60-90 degrees

March 2014 Testing 3 Months later

  • Before Treatment: 65- 100 degrees
  • After Treatment: 52 – 100 degrees

 

OCTOPUSS 301 VISUAL FIELD TEST

 Note: This is a machine like the ones used by retinal specialists, only it stops at 30 degrees vs. 90 degrees.

Left Eye:

  • Before Treatment: I saw two dots flash
  • After Treatment: I saw nine dots flash

March 2014 Testing 3 Months Later

  • Before Treatment: I saw 5 dots flash
  • After Treatment: I saw 8 dots flash

 Right Eye:

  • Before Treatment: I saw three dots flash
  • After Treatment: I saw eight dots flash

March 2014 Testing Three months Laster

  • Before Treatment: I saw seven dots flash
  • After Treatment: I saw seven dots flash

 

COLOR CONTRAST

Note: This test measures ability to differentiate colors

  • Before Treatment: 6 out of 9 cards correct
  • After Treatment: 8 out of 9 cards correct

March 2014 Testing 3 months later

  • Before Treatment: 9 out of 9 cards correct
  • After Treatment: SAME

 

CONTRAST SENSITIVITY

Note: This test measures ability to pick up color as it fades

  • Before Treatment: I could identify 7 out of 8 lines
  • After treatment: I could identify ALL 8 lines

March 2014Testing 3 Months Later

  • Before Treatment: I could identify ALL 8 lines
  • After Treatment: SAME

 

 

 

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Going it Together

Written By: ingridricks - Mar• 19•14

photo

The coolest, most unexpected part of my eyesight healing quest has been connecting with other people struggling with Retinitis Pigmentosa who — like me — refuse to take “no hope” for an answer.  And they all come with incredible family members who are equally determined to ensure that their loved ones  continue to SEE the world.

Last night, a group of us all headed to dinner. There was no stress about not being able to find the table or see the menu — because at least half of us were in the same boat, and the others stepped in to help, Several of us have been to Dr. Rosenfarb’s clinic for treatment before and it’s empowering to hear how the treatment has been benefitting them. Joe, who is in town for his second treatment session, even discussed how we might secure permanent housing here that would help offset lodging costs for patients traveling to New Jersey for treatment.

It’s a reminder of the exponential power of community. The only bummer part of this picture is that it’s missing Karen (Joe’s sister), who volunteered to take the picture.

 

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Acupuncture Treatment Round 2 – Baseline Test Results

Written By: ingridricks - Mar• 17•14

iStock_000004226338Medium-2

I’m back in Westfield, New Jersey, for my second treatment session with Dr. Rosensfarb.  In the three months since my first treatment visit,  I don’t feel like I’ve had much of a chance to breathe. My schedule has been crazy because of  the nationwide launch of my memoir, Hippie Boy, which in turn has led to an expanded spotlight on the teen storytelling project I’m lucky enough to be involved, and nonstop requests to present at schools and organizations.

The reason all of this matters is because my adrenal glands were already shot before the craziness started and I was supposed to be relaxing and taking it easy these past three months. Given it all, I wondered if any of the improvements I’d obtained during my last treatment had stuck or if I would be starting from scratch. I definitely took a step backward in some areas– but held steady and even improved a little in others. All in all, I’m happy because I retained at least some of the improvements I gained in December. Below are my baseline test results from this morning – compared to my before & after test results from December.  I’ll post my “after treatment” test results this Friday.

VISUAL ACUITY

Near Right Vision:

  • Before Treatment: 20/125
  • After Treatment: 20/50

 Baseline Testing 3 Months Later:

  • Before Treatment: 20/63

Near left Vision

  • Before Treatment: 20/80
  • After Treatment: 20/50

Baseline Testing 3 Months Later

  • Before Treatment: 20/63

 Far Right Vision:

  • Before Treatment: 20/40
  • After Treatment: 20/25

 Baseline Testing Three Months Later

  • Before Treatment: 20/30

 Far Left Vision:

  • Before Treatment: 20/40
  • After Treatment: 20/25

 Baseline Testing 3 Months later

  • Before Treatment: 20/30

 

MANUAL VISUAL FIELD TESTS: RIGHT EYE

Right Eye Horizontal (central core)

  • Before Treatment: 0-2 degrees
  • After Treatment 0-6 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-2 degrees

Right Eye Horizontal (far periphery)

  • Before Treatment: 50-80 degrees
  • After Treatment: 40 – 93 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 40 – 80 degrees

Top Right Eye (Vertical)

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-9 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-4 degrees

Bottom Right Eye (Vertical)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-6 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-4 degrees

Bottom Right Eye Vertical (far periphery)

  • Before Treatment:  80 – 90 degrees
  • After Treatment 65 – 90 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 60- 100 degrees

MANUAL VISUAL FIELD TESTS: LEFT EYE

Left Side Horizontal (central core)

  • Before Treatment: 0- 6 degrees
  • After Treatment: 0-6 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-4 degrees

Left Side Horizontal (far periphery)  

  • Before Treatment 80-90 degrees
  • After Treatment: 70-95 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 65- 95 degrees

Top Left Eye Vertical (central core)

  • Before Treatment: 0-6 degrees
  • After Treatment: 0-6 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-3 degrees

Bottom Left Eye Vertical  (central core)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-7 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 0-4 degrees

Bottom Left Eye Vertical (far periphery)

  • Before Treatment: 70-90 degrees
  • After Treatment: 60-90 degrees

 Baseline Testing 3 Months later

  • Before Treatment: 65- 100 degrees

 

OCTOPUSS 301 VISUAL FIELD TEST

 Note: This is a machine like the ones used by retinal specialists, only it stops at 30 degrees vs. 90 degrees.

Left Eye:

  • Before Treatment: I saw two dots flash
  • After Treatment: I saw nine dots flash

 Baseline Testing 3 Months Later

  • Before Treatment: I saw 5 dots flash

 Right Eye:

  • Before Treatment: I saw three dots flash
  • After Treatment: I saw eight dots flash

 Baseline Testing Three months Laster

  • Before Treatment: I saw seven dots flash

 

COLOR CONTRAST

Note: This test measures ability to differentiate colors

  • Before Treatment: 6 out of 9 cards correct
  • After Treatment: 8 out of 9 cards correct

 Baseline Testing 3 months later

  • Before Treatment: 9 out of 9 cards correct

 

CONTRAST SENSITIVITY

Note: This test measures ability to pick up color as it fades

  • Before Treatment: I could identify 7 out of 8 lines
  • After treatment: I could identify ALL 8 lines

 Baseline Testing 3 Months Later

  • Before Treatment: I could identify ALL 8 lines

 

 

 

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